King's College London

For individuals from ethnic minority communities, there may be additional challenges to navigate, including experiences of discrimination, language barriers and cultural misunderstandings, alongside wider inequalities in health, employment and financial security.

This was particularly difficult for people living with mental health conditions that are not always visible or change over time. Participants described how someone might be able to manage an activity one day but struggle with it the next. Participants felt that it could be difficult to explain this when assessments were based on fixed questions and criteria.

Many felt they had to repeatedly "prove" how unwell they were in order to access support. Rather than feeling listened to and supported, participants sometimes felt they were being tested or judged. In some cases, participants described the process of seeking support as adding to their distress or negatively affecting their mental health.

Participants told us that these difficulties could be even harder to navigate for people from ethnic minority communities. Some described difficulties in accessing language support when it was needed. Participants highlighted that communication problems go beyond language - people from different cultures may talk about mental health and distress in different ways. This can shape how they communicate their experiences to professionals and how those experiences are understood.

Participants highlighted that these experiences do not happen in isolation and described how difficult experiences with the benefits system build up over time. Some felt that repeated interactions with a system they found confusing or unresponsive could affect their trust in the system and make them more reluctant to seek support in the future.

Some described reaching a point where the stress of continuing with a benefit claim outweighed the support offered, leading them to disengage from the system altogether. Leaving the benefits system does not mean that the need for support has disappeared.

Participants were concerned that disengaging could leave some people with greater financial insecurity, with consequences for their mental health and opportunities to find or stay in work.

Benefits as a platform for work and recovery

While participants talked about the problems with the benefits system, they were also clear that the financial support itself can make an enormous difference to people’s lives. For people living with long-term health conditions or disabilities, access to financial support like Personal Independence Payment (PIP) can help cover additional costs that come with managing a health condition or disability. 

Beyond meeting these costs, having reliable financial security provides vital "breathing space". When people are worried about paying bills or meeting basic needs, finding the right job can become less important to finding any job as quickly as possible. Participants described how greater financial stability could give people the time to focus on their health, rebuild confidence, and think realistically about the kind of work they could do and what support they might need to sustain it.

For participants, this meant that receiving benefits and moving towards employment were not necessarily competing goals. Instead, an effective safety net could provide a foundation for recovery and, for some people, a more sustainable route into work. The difficulty was that accessing that safety net could, for some participants, also involve considerable stress.

Participants described complex forms, intrusive questions and long periods of uncertainty while waiting for decisions. Some spoke about feeling disbelieved or dehumanised by the process, resulting in the loss of dignity and control at a time when they were already vulnerable. For some, this experience was distressing enough that they considered avoiding or stepping away from the benefits system altogether. However, their need for support did not disappear.

Instead, participants described how this could leave people facing greater financial insecurity, additional pressures on their mental health and fewer realistic options for moving towards employment.

When employment support doesn't fit

Participants wanted support that helped people find work they could realistically sustain. When it came to finding employment, participants felt that employment support services did not always understand what it’s like to live with mental health conditions, long-term illness, disability or neurodivergence.

They also felt that services focused more on getting people into work as quickly as possible, rather than finding work that suited their skills, circumstances and health.

For participants, however, getting a job was not the same as being able to stay in one. This was particularly important when participants talked about conditionality and sanctions. The potential threat of losing financial support was described by participants as creating considerable pressure.

Participants were concerned that this pressure could sometimes encourage people to consider work that was insecure or poorly suited to their health and circumstances. If the job did not work out, people could find themselves back where they started, sometimes with their health worse than before.

Participants emphasised that successful transitions into work should focus on whether a person can stay well and in work. For participants, that meant looking at the conditions that make it easier to remain in employment. Participants highlighted practical adjustments such as flexible working hours, access to specialist equipment and support through the Access to Work grant.

They also wanted employment support to recognise what people can do while taking their health and individual circumstances into account, rather than focusing mainly on monitoring whether they are meeting requirements.

The difference the right support can make

Despite the difficulties people described, we also heard examples of support that had made things easier. Participants described how getting help from care workers, university support services, youth groups, Citizens Advice, and local advocacy organisations made a difference.

Having someone who understood how the system worked could make the process feel less daunting. They could help people explain their situation more clearly, understand what financial support they could get and feel more confident challenging a decision they believed was wrong.

This was especially important when we talked about ethnic inequalities. Participants felt that local community organisations could be particularly valuable for people from ethnic minority communities. These organisations may be well placed to understand cultural differences, be able to help with language barriers and already have the trust of the communities they work with.

Participants highlighted that language support is about more than translating a form or providing an interpreter. People may talk about mental health and distress in different ways. Understanding those differences can help prevent people from being misunderstood or judged unfairly.

Where do we go from here?

Participants identified several priorities for future research:

• What helps people find and stay in work? Participants felt that getting into work is only part of the story. They wanted future research to explore what helps people stay in work and feel secure once they are there, including fair pay, financial security, workplace adjustments and the right support for people experiencing mental health difficulties.
• How does navigating the benefits system affect people’s mental health and everyday lives? Participants wanted research to look beyond benefit payments themselves and explore the experience of navigating the system. Future research could investigate: what happens when payments are delayed, decisions take too long, or assessments do not reflect their circumstances? How do these experiences affect mental health, finances, housing, relationships and people’s ability to find or stay in work?
• Do some groups experience different barriers to accessing the support they need, and why? Race, culture and language were important parts of this discussion, alongside disability, mental health, poverty, sexuality and where people live. Participants wanted research to explore how these different parts of people’s lives can combine to shape their experiences. They also raised questions about whether everyone has equal access to clear information about benefits, and whether, and in what circumstances, bias or assumptions might influence people's experiences or decisions about their support.
• What would a more supportive system look like? Participants with lived experience highlighted the need to be treated with dignity, kindness and respect. Professionals also wanted services to work better together, including Jobcentres, health services, local authorities, charities and community organisations. Future research could explore what good support looks like in practice, what makes people feel supported rather than judged or intimidated, and whether earlier and more joined-up support could prevent problems from getting worse.
• What are the wider effects of delays and administrative problems? Late payments, mistakes and long waits can have consequences beyond someone’s benefit claim. Participants wanted research to capture what these experiences mean for people’s everyday lives, including their mental health, housing, finances and relationships. This could help us understand whether, and in what ways, administrative processes affect people's wider circumstances.
• How can people with lived experience have a greater say in research and support? Both groups felt that people who use the benefits system should help shape the research and services that affect them. Participants wanted future research to combine statistics and other evidence with people’s lived experiences. This could help us understand not only where inequalities exist, but why they happen and what could help reduce them.

Looking ahead

The experiences shared during these workshops will help shape the next stage of our research. Participants highlighted several important questions about benefits, employment, and mental health that we want to explore further.

We are currently exploring what data are available to help us answer some of these questions. This includes looking at the potential to use linked administrative data through the UK Longitudinal Linkage Collaboration, bringing together benefit records with information from population studies such as Understanding Society. This data scoping will help us understand which of the questions raised by participants might be possible to investigate using existing data and where important gaps remain.

Alongside this work, we hope to secure funding to develop a programme of research on ethnic inequalities in benefit receipt, mental health and employment. The priorities identified in these workshops will help shape future funding applications and the questions we take forward. While some of the research may be possible using the data and resources already available to us, additional funding would allow us to build on this work and explore these issues in more depth.

But data can only tell us part of the story. The workshops reinforced the importance of understanding the experiences behind the numbers and involving people who know the benefits system through their own lives or their work. These workshops were an important starting point, rather than the end of the conversation.

By bringing together lived experience and professional perspectives, they helped us identify questions that matter to the people who experience and work with the benefits system. As the research develops, we want to keep these perspectives at its heart and build a better understanding of ethnic inequalities in benefits, mental health and employment.